Friedreich's Ataxia Research Alliance - FARA Ambassador Program

FARA Ambassador Program

FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for treatments and a cure.

The Ambassadors are a service team within the FARA organization. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community. Together we seek to know more about the research and pharmaceutical pipelines being developed through FARA in order to be better prepared to represent the FA community when opportunities arise to educate the medical community and potential donors. When meeting with scientific groups, pharma partners, and the FDA, our purpose is to promote awareness of the patient perspective of living with FA. We believe our dedicated support is key to continued success toward our ultimate goal of treatments and a cure.

FARA Ambassador Program Mission Statement:

The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

The Ambassador Blog

This blog is a vehicle for the voice of the FARA Ambassador Program and features posts from Program participants and friends from the FA community on a wide range of topics.

The blog features posts about FARA events, articles about living with FA, spotlights on individuals throughout the FA community, weekly interviews to “Meet the Community,” and more. We hope that you will be inspired, uplifted and encouraged through the FARA Ambassador Blog!

Chelsea Conley

Chelsea Conley 2 Name: Chelsea Conley

Age: 36

Where do you call home? The border of Ohio, WV, & PA in a small town called Flushing, Ohio.

Education (degree(s): I graduated HS and went to a local community college for my Associate Degree in business management.

Who do you live with? I live with my boyfriend of 6 years (Zane), his dog (Emma) and my cat (Athena).

What's a typical day for you? A typical day? My days always change. Usually I wake up, shower, do dishes, and read or play video games. Some days I do laundry. Since having FA usually gets me tired pretty early in the afternoon I tend to wake up pretty early around 6:30 am and get my day started since I always have more energy and feel better in the morning and it gives me more time to get done what I need to.

Teen Hangout May 14th

Join the FARA Ambassadors for a hangout for teenagers with ataxia. FA Teen Hangouts are hour-long web-based hangouts. If you don't have ataxia, you are not allowed to participate in the hangout. There will also be at least two adult FARA Ambassadors present. The adults will be there to help keep the conversation safe and going.

At this hangout, we will discuss your inspirations. Who or what inspires you? All the ambassadors there have something or someone that inspires and motivates them to keep going! Do you have a goal you're working towards that inspires? Is there a person in your life that is always supporting you? Join us for a talk about our inspirations!

When:	Saturday May 14th, 1 - 2 PM ET (The hangout opens 15 minutes early to try to work out technical issues, please remember we are volunteers not IT professionals, come early if you’ve never attended a hangout before)
Who:	Teens ages 13 to 19 (Please note: teens of all ages will be together)
Where:	On Zoom so if you have access to the internet and speakers and a camera on your device, you can come!
How:	If you are under 18, you need to get your parents or guardian to sign a consent form. This should be requested from and emailed to Madelyn at madelyn.frederick@gmail.com. Parents/guardians can also ask questions at this email address. If you have consent or are 18 or 19, Jean will send you the Zoom link once things are set up. If you think you should've gotten the link and didn't, email Jean. 18 and over: just let us know that you want to come by emailing us at madelyn.frederick@gmail.com. A minimum of a half hour before the hangout opens you will be sent a link to join the hangout on Zoom. Been before? If you already have permission or you’re 18+, Jean will email you the invitation to the Zoom hangout without you requesting one. You can come or not as you see fit! If you don’t get one, email Jean at jeantw62@gmail.com. Pop an email to Madelyn if you have questions!

Noah Griffith

Noah Griffith 3 Name: Noah Griffith

Age: 21

Where do you call home? I am from Salem, Alabama originally, which is where my family lives, but I go to college in Auburn, Alabama.

Education (degree(s): I am currently a junior at Auburn studying journalism. I also work as a sports writer and editor for my school’s student newspaper, and I aspire to be an analyst or some kind of beat writer for an MLB team. My current goal is to excel in all my classes and earn the best grades that I can while getting experience as a journalist and learning a lot along the way. I am looking forward to my graduation in December of 2023. I think FA has led me down this path because I loved playing sports as a kid, but since I am not able to anymore, I turned to writing as a way to stay involved with sports without being on the field or court myself. FA has made caused some challenges in my journey as a sports writer so far with arenas and fields being so difficult to navigate, but I am learning how to deal with that as I go, and I hope to make people aware of the fact that people working in sports can need accommodations too, not just fans, because many media rooms and press boxes are not at all accessible, but simple adjustments can be made to change that. I recently wrote an article on the lack of accessibility in Auburn’s Arena and the University responded and made changes as a result of that. This was amazing to see how I can make a difference even just as a student journalist, and I know I have a diverse perspective that will benefit a lot of people to hear.

Who do you live with? I currently live in an apartment at college with two roommates and am hoping to get a service dog at some point this year! However, I am not far from home, so I go home to see my family on the weekends a good bit.

What's a typical day for you? On a typical day, I go to class, eat lunch on campus, do homework and then cover any sporting events or do any writing assignments I have for the day. I also like to watch sports whenever possible and go to Auburn games. I am a huge Braves fan and Atlanta sports supporter, and I’ll watch just about any college football or basketball game. I also like to play video games with my friends at the end of the day to wind down when I have time. Realistically, I would work out every day, but with such a busy schedule I don’t always.

Belén Martín Avilés

Belén Martín Avilés has lived with FA since she was 9-years-old, but she hasn’t let that stop her from becoming a medical researcher. Currently, she is 23 and studying in Southern Spain, but her love of travel takes her to different cities and countries. She credits being diagnosed with FA at a young age with inspiring her studies, desire for adventure, and ability to see the possibilities of life. Her daily exercise routine is something we can all aspire to, but all that smart, tenacious Spanish flair has me motivated.

Name: Belén

Age: 23

Where do you call home? Southern Spain.

Education: University degree of Medicine and Research. I’m in the last year of my degree, doing my final project and practicing in a laboratory to get work experience.

Who do you live with? I live in a house with my father, my mother and my older brother.

FARA Teen Hangout - Apr 28, 2022

Join the FARA Ambassadors for a hangout for teenagers with ataxia. FA Teen Hangouts are hour-long web-based hangouts. If you don't have ataxia, you are not allowed to participate in the hangout. There will also be at least two adult FARA Ambassadors present. The adults will be there to help keep the conversation safe and going.

At this hangout, we will discuss next steps after high school. College? Work? Gap year? All the ambassadors there have navigated their next steps after high school, so this is the place to talk about your worries and your hopes. Ask questions and share your perspective: What should I major in? How do I take notes? I am thinking about working or taking a gap year.

When:	Thursday, April 28th from 7 to 8 PM ET (The hangout opens 15 minutes early to try to work out technical issues, please remember we are volunteers not IT professionals, come early if you’ve never attended a hangout before)
Who:	Teens ages 13 to 19 (Please note: teens of all ages will be together)
Where:	On Zoom so if you have access to the internet and speakers and a camera on your device, you can come!
How:	If you are under 18, you need to get your parents or guardian to sign a consent form. This should be requested from and emailed to Madelyn at madelyn.frederick@gmail.com. Parents/guardians can also ask questions at this email address. If you have consent or are 18 or 19, Jean will send you the Zoom link once things are set up. If you think you should've gotten the link and didn't, email Jean. 18 and over: just let us know that you want to come by emailing us at madelyn.frederick@gmail.com. A minimum of a half hour before the hangout opens you will be sent a link to join the hangout on Zoom. Been before? If you already have permission or you’re 18+, Jean will email you the invitation to the Zoom hangout without you requesting one. You can come or not as you see fit! If you don’t get one, email Jean at jeantw62@gmail.com. Pop an email to Madelyn if you have questions!